UK university to study plight of sickle cell patients in India

NAGPUR: A United Kingdom-based university is planning a comparative study about the difficulties of sickle cell disease (SCD) patients from countries in the major SCD-belt of the world. The focus would be on patients from disadvantageous background. The conclusions and learning from the three-year long study will then be shared with governments of the respective countries and international agencies so that some policy changes can be made accordingly.

Sangeeta Chattoo, a social anthropologist from the department of health sciences, University of York, was in the city on Thursday for preliminary screening for the study. She interacted with members of city-based NGO Sickle Cell Society of India (SCSI). The NGO will also be a part of the study which is currently being presented to organizations that fund medical studies.

“We aim to study the social backgrounds of people suffering from SCD to understand the reason for problems related to access to health care, social situations, legal provisions among other things. We would also want to see how local non-governmental organizations and international agencies like World Health Organisation (WHO) and UNICEF are doing that impact the lives of these people positively,” said Chattoo. She added that in India, the project will cover cities like Delhi, Jaipur and Nagpur.

Sharing her observations about the problems of SCD patients from the region, Chattoo said, “I hear that even doctors here think of SCD as a disease associated with those belonging to the scheduled castes and tribes. Facilities are especially bad for people from far flung and rural areas. Public awareness of the disease is generally low.” The disease, she said, gains importance as an issue related to rights of young people and as a disability which is hardly categorized as one in most countries.

The study which will take into consideration the experiences of patients, health care professionals and NGO workers from Brazil, Africa and India would be concluded in three years’ time. Its findings will be compiled and reported to the concerned governmental and non-governmental agencies. In India, it will be shared with the Indian Council for Medical Research (ICMR) and union ministry of health.

“It would greatly benefit patients if their voice could reach the authorities through this study and their problems would be solved. We would be glad to provide help in the project as our work here could help patients in other parts of the world, too,” said SCSI president Sampat Ramteke.